What You Need to Know About HIV Cure Activism

An Interview With Activist Stephen LeBlanc

Much like it happened during the 1980s and '90s, a new kind of activism is emerging in the fight against HIV. As newer HIV antiretrovirals have helped many regain their health, several activists are not relaxing about their work.

A shift in paradigm occurred when the research world accepted the fact that the "Berlin Patient" was cured of HIV. This shift has also fueled a resurgence of activism that very few people living with HIV are aware of. One of the activists who has been advocating for a cure for HIV even before it became an "accepted" word in the research world is Stephen LeBlanc. Stephen, a 20-plus-year HIV survivor and patent attorney, was kind enough to agree to be interviewed for TheBody.com to let us all know how we can join the new wave of activism that will lead to a faster HIV cure.

Stephen, can you tell us a little bit about your experience in HIV activism for the folks who do not know you?

I have been an LGBT community activist since I came out in 1982, at age 20. When I lived in Boston, I worked to pass the Massachusetts Lesbian Gay Civil Rights Law and worked on a number of anti-hate/violence projects. In 1995, I joined ACT UP Golden Gate in San Francisco and became an AIDS Treatment Activist. I worked on making treatments for wasting syndrome and opportunistic infections available before we had effective antiretrovirals. I worked on campaigns for early access to protease inhibitors and for use of protease inhibitors in powerful combinations before combination therapy was widely accepted as critical.

What is the AIDS Policy Project and what makes it different than other advocacy organizations?

The AIDS Policy Project is an organization started by long-time AIDS activists and people with AIDS to focus exclusively on changing the research climate and funding priorities to developing an actual cure for HIV. At the time we started working on this campaign, in 2009, the word "cure" was generally unacceptable to use in AIDS research or policy circles. In our initial research, we learned that less that 3 percent of the NIH AIDS research budget (about $60 million dollars out of a $1.5 billion dollar research budget) was going towards finding a cure. While prevention and improving AIDS treatment access remains critically important, as an organization we believe that ensuring that appropriate resources are directed to cure research is vitally important to the 33.3 million people living with HIV in the world and to ending the AIDS pandemic.

Advertisement

Some readers believe that the cure of AIDS is already available but it has been withheld by companies who want to sell HIV drugs. What can you tell them to clarify this?

I certainly understand the skepticism many people have about the drug companies. In my own experience, the scientists who work at these companies are relatively open about their research and honest. They also have many interactions with scientists in academia and with community activists who are scientifically literate. Even if someone believes that the drug companies are corrupt, the scientists who work there mostly are not and are in relatively constant communication with other scientists.

As a community activist with a scientific background, I have some understanding of why HIV is so difficult to cure. Important human viruses general fall into two categories: (1) those from which some people naturally recover and are then immune from re-infection, and (2) those that generally never naturally cause people to become immune and can cause persistent infection. Scientists have substantially reduced, and in one case eliminated, many of the first types of virus that were major killers (Smallpox, Whooping cough, Measles, Polio, Diphtheria) through vaccines. In these cases, scientists have repeatedly stepped forward to cure or eliminate diseases that it might have been more profitable to chronically treat. There really is no evidence that any drug or treatment has been "held back" from the world at large in order to increase profits.

Both the HIV cure and the HIV vaccine are very hard to develop because of the nature of HIV infection. As for the cure, any of your readers can read the hundreds of scientific papers discussing and documenting that HIV can hide silently in cells in the body for many, many years (possibly a lifetime) even in patients with undetectable viral load. Scientists do not yet know how to identify or eliminate these cells. This simply is a fundamentally hard problem. No one knows for sure what a cure would even look like (almost certainly not just a pill you take for 10 days). So, the idea that someone has a cure available but just is not bringing it forward does not make much sense to me.

The more important issue is whether industry or the government will want to spend the hundreds of millions, even billions, of dollars that developing a cure is likely to cost. The amount of money devoted to this research is increasing, but not nearly fast enough and not to the levels necessary.

What do you think are the main advocacy efforts that we as people living with HIV need to work on to advance HIV cure research?

More money, more money, more money! More collaboration and sharing of data between researchers! More ideas being pursued! More openness to new ideas!

Researchers want to work in fields where they can make a difference and make a decent career. Both of those require money. New medical technologies are being developed every year. One of them, or some combination of them, might lead to a cure. But we need hundreds of researchers around the world working on HIV cure research to make sure that as new technologies come online they are applied as appropriate to possible cure therapies. There are not nearly enough researchers working in the field now.

Patients also need to educate themselves and one another about cure research and be present in the rooms when cure research is being discussed and decisions about funding and other issues are being made. Crixivan (the first very successful protease inhibitor) happened in part because ACT UP New York activist Bill Bahlman was in the room with Merck researchers (including Emilio Emini) when initial setbacks happened. The researchers were dejected, but Bill told them to dust off and keep at it. Bill Bahlman was there because there were AIDS activists across the nation following almost every possible AIDS treatment being developed. We have a very small handful of people doing work like that today. We could use many more.

Do you think there is politics within the research community that could impede progress towards the cure for HIV?

Within every community, from Congress to your neighborhood book club, there are politics that resist change and outside ideas. HIV research, for understandable reasons, has been dominated by virologists, small molecule drug manufacturers, and vaccine specialists. Most of the funders, most of the people reviewing grants and scientific papers, all come from these fields.

The first person cured of HIV, Timothy Brown, was cured by a cancer doctor with no previous HIV experience, using a cellular transplant therapy. This happened entirely outside of the multi-billion dollar international AIDS research community and was accomplished by a 38-year-old German hematologist-oncologist who had never treated a person with HIV before. I do believe that cure strategies unfamiliar to those who have been working in HIV for decades, like genetic therapies and cellular therapies, receive more skepticism and less support and funding than they should.

I also think there is a bias for strategies that people can immediately envision being made available to all 33.3 million people with HIV. For example, a theoretical $100,000 cure based on genetic engineering and cellular transplant would initially be available mostly in the developed world. But, that makes it no less important to develop now. The $25,000 annual antivirals used in the United States are now being made available in the poorest countries for $135 per year. Also, a $100,000 cure in the developed world would save at least hundreds of thousands of lives and free up AIDS treatment resources that could the be used in the developing world.

Winstone Zulu, an amazing African AIDS activist and PWA who died in 2011, was a huge supporter of the AIDS Policy Project and was unambiguous is saying "Yes, yes, yes. We badly need a cure. Why is all the important research on treatments, vaccines and microbicides? What about me who is already infected? ... Time for a cure!"

We have recently seen some news about Timothy Brown, the Berlin Patient, that hinted at the fact that he may not be cured or that he may have been reinfected. Can you tell us what is behind that story?

Timothy is such a hero for people who care about a cure for AIDS. After going through extreme tragedy and stress in his life (becoming HIV positive and living with HIV for years, then being diagnosed with terminal, rapid-onset leukemia at age 38, then suffering a horrible mugging in Berlin), he has for the last several years been extremely cooperative in I believe every research project he has been asked to participate in, including giving lots of blood, doing all kinds of tissue biopsies, flying to research sites in different parts of the country.

He clearly has been and remains cured in terms of having no viral load, taking no anti-HIV medicines for five years, and having normal CD4 cell counts.

However, researchers wanted to know if they could detect any virus anywhere in his body. No one found whole virus or replicating "live" virus, despite looking for that. However, some labs, using ultra-sensitive DNA testing, detected fragments of HIV that they announced were different from the HIV DNA that Timothy had been infected with. Preliminary results of this research were presented in a session at the International Workshop on HIV & Hepatitis Virus Resistance and Curative Strategies in Sitges, Spain, in June. The researchers who presented the data, and many, many scientists, suggested that false signals or contamination were likely sources of some or all of the HIV signals found. This is a known and common problem with ultra-sensitive DNA tests.

One attendee of the conference, however, decided to issue a press release based on this presentation and substitute his own conclusions for those of the scientists who did the work. His press release was both very unusual and highly unethical. First off, it is bad form to issue a press release about another scientist's preliminary research results. Generally, you allow the initial researcher to release their own data, and then you discuss or critique or criticize or refute it. Secondly, the attendee added a sensational conclusion to the press release that none of the researchers involved agreed with, that Timothy still showed signs of active infection. Finally, the attendees stated that Timothy might have been reinfected, which is wild speculation contradicted by the data presented, and that tests were being done to see if Timothy could infect others, which is false. The tests were done. There is no evidence of replication competent virus in Timothy.

Comment by: michael
(los angeles)
Fri., Aug. 24, 2012 at 3:17 am EDT
here's the schtick......some believe a cure is being withheld because it is rather silly that there are lifesaving drugs available that one takes for the rest of their lives but they are insanely expensive. why in god's name are their patents on these medicines that allow these drug companies to charge 1500/month for medicines, while these same medicines are being sold in generic forms in other countries for 150/month. if there is more competition on these drugs, then even the 150/month generic pricing would significantly drop to tremendously help the population.....

so again, i raise this issue......if the government really wants to help reduce the spread of this disease, they could easily do so by outlawing patents on medicines that saves lives.......but they don't. there is a moral dilemma here and most of the people live in the dark on how things really work in this world.

Comment by: Kauli
(Windhoek- Namibia)
Thu., Aug. 23, 2012 at 4:28 am EDT
I have been living with HIV for the past 26 years.There was a time when I was on seriously depressed and I still have some
panicing attacks. What should I do to avoid these attacks?

Or maybe we need to make it worth their while? Why doesn't some multi-billionaire offer a billion dollars as the prize to whichever team develops an effective cure that can be applied with relative ease to anyone suffering from HIV?

Comment by: Jake
(New York)
Wed., Aug. 8, 2012 at 12:27 pm EDT
Yes! Yes! Yes! Enough of funneling huge amounts of money to more treatment medications that just end up fattening the pockets of drug companies. Yes, let's spend some on this, but the bulk of funding and donations should be directed to finding a cure.

Comment by: Kate Krauss
(Philadelphia)
Wed., Aug. 8, 2012 at 12:06 pm EDT
Since this article was written, we've published a new (short and sweet) report: FOR THE WIN: CURING AIDS FASTER. Check it out on our web site: www.AIDSPolicyProject.org

(Please note: Your name and comment will be public, and may even show up in Internet search results. Be careful when providing personal information! Beforeadding your comment, please read TheBody.com's Comment Policy.)

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.